After the Whipple?

Discussion Board Forums Introductions! After the Whipple?

Viewing 15 posts - 1 through 15 (of 24 total)
  • Author
    Posts
  • #26413
    tiapatty
    Member

    Chance4,

    Thank you for this information, it is very helpful. I don’t think we have a resident expert on medical billing so please stick around!

    Patty

    #26412
    just_jill
    Member

    Hey Chance, Thanks for that information. May become even more important, as my husbands employer is rumored to be talking of closing the plant he works at. 25 years on their insurance and I have never needed it more than we do right now.

    #26411
    chance4
    Participant

    JILL,
    I am a medical biller. My mother also had the same type of cancer and she had bc/bs which only covered a percentage of her expenses. She also had a $500.00 deductible. Legally, you have to pay your deductible but you can ask any facility if they will accept assignment for the co-insurance. Which means, would they accept whatever the insurance company pays as payment in full. If they won’t you can ask if they would consider reducing the bill. Most places will do this, as they are getting paid something and they do understand your situation. My mothers bill at one facility was over $3500.00 they accepted $1000.00 as pmt in full. Another facility agreed to accept whatever the insurance company paid as pmt in full. If one person tells you no, wait a while and then speak to someone else, you will run into those who have no compassion or understanding. It never hurts to ask, as this is a long rough road. I wish you the best of Luck, may God be with you every step of the way.

    #26410
    just_jill
    Member

    I want to say thank you to everyone. Please know that I am praying for each of you , those that are themselves stricken and those that are caring for loved ones. How I wish there was no need for forums like this, however, it is a great benefit to those who are seeking information!

    #26409
    roma35
    Member

    Jill,
    I wanted to welcome you to the site and let you know, I am thrilled you had a good report. My father has battled Cholangiocarcinoma for 20 months and is at the end of his battle as we have called in Hospice. I cant get enough of good news for other CC patients. I dont want to hear of anyone else dying of this disease. Hearing good stories like yours makes me so happy that another family may not have to go through this loss. Keep up the good reports.
    Barbara

    #26408
    duke0929
    Member

    hi jill, im a relatively new member to this site also and im glad i found it….the people here are wonderful …its a place where you can share your experiences with people who are fighting the same monster and get a good feed back about procedures and what to expect …i was brought here when my wife was diagnosed with cholangiocarcinoma (I HATE THE WORD) last march…since then she has had 6 months of chemo(gemzar) which has contained itand then a stent….most recently she was a candidate for the sir-spheres procedure this was done on feb.5…as of last night after the blood test results her oncologist thinks that her condition is stable (and i thank god an the doctors for that )..but wont really know until until a pet is done in the coming weeks…but we are very hopeful…what i have learned over the past months is that you must be your advocate…take the bull by the horns and refuse to hear the word no…keep researhing looking for answers ask questions..if one doctor says no find another..never stop trying…i am sorry if im rambling on its been a year full of frustration…what im really trying to say is that i wish you and your family continued good news and as everyone else here i will pray for them ….welcome ron

    #26407
    lainy
    Participant

    Jill, I used to feel guilty posting all of Teddy’s Miracles here but these good people finally convinced me that no matter what, our good news gives others hope and that is what is important. You and Teddy have paid dearly for it and it does feel good to read other’s good news. I am getting a little anxious for Friday’s results. Teddy seems a little out of sorts lately. He looks good, but he is very antsy, is itching a tad more than usual and gets very tired. He was complaining yesterday that his legs are so tired and his hips are sore. Could be nothing but having been around this too long I don’t trust anything until I hear the ONC words. I try not to show him I am worried about the way he is feeling.
    For 76 years young he really tries to push himself as he hates feeling down. But, you my dear, keep the good news coming!

    #26406
    marions
    Moderator

    Jill…. it always is great to be able to share great news.
    Thanks for posting this.

    #26405
    just_jill
    Member

    Thanks Lainy! I will be praying that you guys have great results as well.

    I feel kinda guilty for great results, when there are 3 people in my life fighting lung cancer. Two are not getting good results from their chemos, and one is just starting his fight. Gosh, what I would do for them to beat this crap!

    #26404
    lainy
    Participant

    YEA!!! On the PET Scan. Unfortunately with CC the only thing we know for sure is that it does return. For the type you and Teddy have 4 ONC told us no to chemo. Radiation is ok depending. Teddy had radiation to reduce the tumor so he could proceed with the cyber knife to kill the monster. Teddy went 3 1/2 years clean. But we got it this time as well and thats as good as it gets. This is why the watchful eye is so important. We go to the ONC Friday for the latest LAB report and etc. We are so happy about your PET Scan.

    #26403
    just_jill
    Member

    Just wanted to update with my Pet scan results.
    All looks good. No cancer cells showing up.
    Blood work shows I am a quart or two low, so more testing to see where that is going to.

    #26402
    just_jill
    Member

    Thanks RS, I do appreciate your taking time to reply.

    I go back tuesday for the results of the blood work and PET scan. We shall see what , if anything is showing up.

    As far as Chemo and Radiation, the oncologist seemed to agree with me, that no study has shown that this is going to prevent the cancer from returning. From everything I have read, its almost guaranteed that within two years, your going to have some sort of reoccurance, where its another tumor or another type of cancer. You are very lucky, as you have not had this?

    Jill

    #26401
    rs-in-pa
    Member

    Hi Jill. It’s my first time posting here, but saw your post and had to answer.

    Just about 5 yrs ago, when I wish I had gall stones, I was dx’d with PC. Not knowing any better, I was lucky enough to end up at Hopkins in MD (I live in PA). Post-whipple, they said I had BDC that grew into the pancreas. At that time, they said the standard of care, and treating it the same as PC, was to follow up with radiation and chemotherapy.

    At a local hospital, I did the 5FU pump (5 days on, weekends off) and radiation. Then followed up with 1 a week sessions of Gemzar for 4-6 weeks (not quite sure). Please do the followup as it’s better to rid yourself of any of those lingering cells now. Later is a whole different battle.

    Hopkins has a very active PC board where everyone goes. The BDC board is not very active. Lots of info (and searches are helpful).

    While I’m looking forward to celebrating my 5 yr whippleversary on 8/3, I wish you and your family the very best.

    RS in PA

    #26400
    just_jill
    Member

    Wow. He has been through a bunch. He sounds like a strong man. Praise the
    Lord. His work is not yet done. I can only hope to be such a positive person at 76 years old. You are very lucky to have him!

    #26399
    lainy
    Participant

    Not sure where I am anymore so will try to tell you briefly. We were visiting our kids in Milwaukee for 2 weeks and it turned in to 3 months. Teddy had been itching and got very tired and sickly. In just 2 days he totally jaundiced. Went to my son’s family doctor he ordered tests and in 5 days the diagnosis was Bile Duct Cancer. It was contained in the bile duct valve. Doctor said if, when he got in there and it had spread he would close up. Longer he is in surgery, better the outcome. After 4 hours he came out and said I have good news and not so good. My first thought was I didn’t hear the word bad. When he went in he discovered that the dye from the endoscopy leaked on the pancreas and literally destroyed it. He needed a healthy pancreas as he had to cut the head to get to the bile duct. Good news was he felt the cancer was contained. Went back to son’s to spend a few weeks gaining strength and Teddy came down with a double ecoli infection, that almost did him in. Back to the hospital and on anti biotics for 9 days and doc decided the pancreas was good enough. Time to proceed for the second Whipple. An 8 hour surgery was totally successful. Came home to Phoenix a month later and arrived safely after his 2 tubes blew out on the plane! In about 2 weeks he had a leakage and CT Scan showed that a small hole developed at the resection. He went in to rehab for 3 weeks on NOTHING but and IV. Nothing! The doc here felt she didn’t want to put him through another surgery and if we could starve it the hole would close up. It did. That was 3 years ago. All was going good until last April when the CC returned to where the duodenum used to be. Radiation last summer to bring it down in size and in December cyber knife to kill the monster. So far so good again. You can easily see why we all call him our Miracle Man. He is now 76. Sees the ONC every other month with LABS every month. Vigilance is the key now. On the other side the cancer that returned and all the scar tissue pushed his right ureter closed and he has to have a stent exchange every 2 months for life. We have just been told the stent will not work for ever and he will have to go back on a nephrostomy bag down the road. Never in my life thought I would learn so much about something I wish I never knew! We are very strong about it, talk a lot about it and that helps.
    We know what we are facing and view each day as a gift. Teddy believes that attitude is everything. He also feels his work down here is not done. We all need him too much.

Viewing 15 posts - 1 through 15 (of 24 total)
  • You must be logged in to reply to this topic.